The Stages of MCS
(The following is an excerpt from my paper,"Solving the Riddle of Chemical Sensitivity: The Importance of TRP Channels," which can be downloaded from the home page of this site.)
In my earliest days of knowing I had chemical sensitivity, I ran across the web page of environmental engineer Rabin Prusty, which described MCS as advancing in stages. It made sense to me that my problem did not just come from ‘out of nowhere.’ Although I have found no other sources which delineate particular stages of MCS, it is widely recognized that the condition impacts different people with varying degrees of severity. I find it very helpful to understand MCS as a spectrum in which one may perhaps move back and forth between stages.
Stage One: A dislike for perfumes and/or an aversion to strong smells and chemicals. Mild headaches from scented products like candles or air fresheners, or feeling ill walking down the laundry aisle in a supermarket. This is the stage likely experienced by those 12 to 16 percent of Americans who say they are unusually sensitive to chemicals.
Stage Two: This is the stage where MCS becomes suddenly obvious and reactions “spread” to other chemical irritants, such as gasoline fumes, or outgassing from many other normally-tolerated items such as computers, carpets or cupboards. Reactions worsen from mild headaches to more severe headaches and brain fog, and may begin to include other bodily systems such as the cardiovascular (racing heartbeat and palpitations), skin (hives, rashes, itching, swelling), lungs (asthma like reactions), or gastrointentestinal upset. This is also the stage in which food intolerances begin to appear, such as getting a headache or diarrhea when eating strawberries or drinking tea. One’s sense of smell becomes bizarrely heightened, and leaving the house becomes increasingly difficult. This is undoubtedly the stage experience by those 2 to 6 percent of Americans who have reached the point of being diagnosed with MCS.
Stage Three: Leaving the house becomes a nightmare during this debilitating stage. The slightest hint of fragrance chemicals can lead to frightening symptoms in which it feels as if every system is going haywire (from a surge in histamine). It especially hits the brain – not only punishing headaches, and dizziness, but one may burst into tears for no reason, or have trouble navigating normal tasks. Reactions may also include extreme tachycardia (racing heartbeat), blood pressure sharply rising or crashing, all-over skin itching, facial edema, throat swelling, a metallic taste in one’s mouth, or other anaphylaxis-type reactions. Some may experience sudden diarrhea or a constant need to urinate (again, due to excess histamine). Many medications and almost all foods can trigger the same reactions, especially processed chemical-laden food, and many trapped in this stage live on a diet consisting of only five or six foods (such as low-salicylate unseasoned meat, rice, potatoes, pears). This is also the stage where face masks become indispensable and many people feel they have no choice but to give up their lives and go live isolated and alone in a trailer or tent in the woods.
Stage Four: This extremely advanced and life-threatening phase is apparently rare, and most likely caused by catastrophic chemical injury. In this stage, it is impossible for the sufferer to breathe almost any air without an oxygen mask, and any exposure to chemicals can cause seizures, brain damage, or even death through anaphylaxis. This stage is life made impossible.
When I first encountered the idea of stages, it was clear to me that I had been experiencing the early stage of MCS for years, even decades. I’d long since quit wearing perfume or using scented laundry detergent as they always made me feel “yucky.” The smell of scented candles or air fresheners in someone else’s house always seemed overpowering and unpleasant.
It was also clear to me that in August 2013, I had suddenly progressed into Stage Two of the condition. And in the first two months, when I was still clueless about MCS and didn’t know enough to avoid scented cleaning products, my reactions continued to worsen week by week, and I’m sure that for a short time I had actually advanced into Stage Three. In fact, late one evening I called 9-1-1 because I was certain I must having a stroke or heart attack or both. (Later, after several bad reactions to food coloring, I realized my paramedic-diagnosed “panic attack” had actually been an anaphylactoid reaction to the dyes coating a Benadryl capsule.)
Once I figured out what was happening to me and began practicing chemical avoidance, I moved back into Stage Two and life became more manageable. But I stayed in Stage Two for another four dark and depressed months, feeling sure I was “stuck” that way forever, and desperately searching for the answer to my problem.
Today, I am mostly back in Stage One; I still have a strong aversion to perfumes and chemical scents, but in what feels like a miracle, I can go many days without the symptoms of a reaction. I can once again eat (most) any food I like without a crippling headache. Although I still have MCS, I believe my “recovery” back to the more normal life of Stage One was due to measures I took once I fully understood the nature of TRP channels, what can cause them to malfunction, and then changed my habits accordingly.